Caoimhghín Ó Caoláin (Cavan-Monaghan, Sinn Fein)

I welcome this Bill and I commend Deputy Twomey on bringing it forward. It provides a welcome opportunity to address an issue with which we are only beginning to come to terms as a society. I do not believe for a moment Deputy Twomey or his Government colleagues propose to bulldoze this Bill through without all the appropriate consultation and engagement across the widest possible plateau of opinion.

People are living longer. Medical science is expanding all the time and, in developed countries at least, it is combatting illness and disease ever more effectively and in such a way that life expectancy is being extended as never before. This is hugely positive. At the same time, it entails its own challenges. Care of an older population is a huge challenge. Care of persons with long-term illnesses is equally challenging.

We are also faced with new dilemmas or at least dilemmas which were always with us and are now in sharper focus. Among these is the possibility and the wish to determine future care before the capacity to do so is gone, especially where a terminal illness is concerned, and especially given the ability of medical science to prolong life artificially and mechanically. For many this is not a choice they will want to make at all. They will be content to leave it in the hands of medical professionals and their families, often with the hope that what seems to be a terminal illness may prove not to be so. However, many will wish to have the choice, and Deputy Twomey has already placed many such examples on the record. Many will wish to have the choice not to continue with artificial prolongation of life where all avenues of recovery are closed. We need to increase knowledge and debate on these issues and today provides such an opportunity.

The term "end of life" is now commonly used. I respect that, but we should not shy away from talking about death. We should not be afraid to think or talk about that which faces us all. Last year the National Council on the Forum on End of Life, sponsored by the Irish Hospice Foundation, launched the "Think Ahead" project. Think Ahead is an initiative which encourages persons to prepare for the end of their lives by providing a form that records treatment preferences. This can then be accessed by named parties or authorised health professionals if the person is unable to articulate his or her wishes. A think ahead form is described as a private and confidential document storing information about a person's emergency contacts and preferences for treatment and care which can be accessed by key persons when they cannot articulate their wishes themselves.

Elements and benefits of such a document include next-of-kin contact details, organ donation preferences, end of life care preferences, initiating dialogue, promoting efficiency and quality of care and education. As the law stands such a document is not legally binding and could be implemented only on a purely voluntary basis. If passed, the Bill would have the effect of giving a legal basis to end of life care preferences. It would allow for an instruction to refuse life-sustaining treatment and for the appointment of an attorney, who could make certain decisions on a person's behalf. A health care professional would have no legal liability when he or she follows an advance decision that he or she believes is valid and applicable to the condition being treated. A health care professional would thereby have a defence if he or she acted in good faith.

Naturally, complex ethical and legal issues remain to be fully teased out both in a wider public debate and, if the Bill proceeds, during its passage through the Oireachtas. This is a case in which we should proceed with caution. My approach, somewhat different from the last contributor, is festina lente, let us hasten slowly but nevertheless progress the proposition and what is entailed in the legislation before us this morning. For example, some medical professionals may have ethical difficulties implementing an advance care decision, especially where it involves not continuing artificial life-sustaining treatment. Such ethical concerns need to be taken into account. This issue is bound up with the question of the need for a firmer legal definition of capacity, a person's ability to make decisions.

The mental capacity Bill is promised but I understand the Minister of State, Deputy Kathleen Lynch, has ruled out inclusion of provision for advance care decisions in that legislation. Will the Government side explain why this is the case, especially since the Bill before us today is being proposed by a Government Deputy and, I understand, is not being opposed by the Government side? Ideally the two Bills would proceed in parallel or would form part of one comprehensive tranche of legislation so that all the relevant and inter-locking issues could be considered together. If the mental capacity Bill does not include advance care decisions and since this Bill rules out advance care decisions for treatment deemed lawful under the Mental Health Acts 2001 and 2008, where does it leave people with mental illness? It would appear to exclude them from any provision for advance care decisions. It implies that people with mental illness do not automatically have the mental capacity to make decisions. We know, however, that mental illness in all its forms is not a static condition, no more than many other forms of illness are static, and capacity, when lost, is not necessarily irretrievable. We do get better and we can get well from mental illness arising during our lifetime. Our role and responsibility collectively on both sides of the House is to work together to arrive at the best possible content in the legislation. Therefore, if the Bill is to proceed and to be improved and if the mental capacity Bill is to leave out advance health care decisions, the apparent exclusion of people with mental illness should be included by way of amendment.

This demonstrates the wider need to modernise mental health legislation in line with the new UN Convention on the Rights of Persons with Disabilities. I commend the Irish section of Amnesty International on the work it is doing in this regard. Amnesty International has made the point that new capacity legislation should revolve around supports for people to make decisions for themselves or to have decisions taken that are centred around a person's will and preferences, as per the UN Convention on the Rights of Persons with Disabilities. Civil Society organisations here have drawn up essential principles that include:

Advance planning should be an option that is available to all (including planning in relation to mental health). Awareness-raising and education around advance planning as an option is a key part of a supported decision-making model.

Advance planning should be subject to safeguards which ensure that the decision to appoint a representative reflects the will and preferences of the person and that the representative does not abuse his/her position or act outside the prescribed role.

There should be a meaningful ability to challenge and reverse the appointment of a representative in advance planning.

Amnesty International also makes the point that advance directives which apply to mental health have been introduced in several countries, including Germany, Austria, Scotland, England, Spain, Belgium, Denmark, Estonia, Finland and Hungary. Other states are working towards providing for them. At the Oireachtas Joint Committee on Justice, Defence and Equality hearing on capacity legislation last February, several organisations, including the Law Reform Commission expressed the opinion that the capacity legislation should contain provision for advance directives. Patricia T. Rickard-Clarke of the Law Reform Commission stated, "capacity legislation should include strong provisions on advance decision making, including advance care directives". She continued:

The legislation should be facilitative in nature and be seen in the wider context of a process of health care planning by an individual, whether in the general health care setting, mental health care planning or in the context of hospice care. An advance care directive should be defined as the expression of instructions or wishes by a person of 18 years with capacity and should also apply to advance care directives that involve refusal of treatment subject to certain conditions specified in the legislation. In other words, a person cannot refuse basic care but can refuse artificial life sustaining treatment.

The strong point about the inclusion of these measures in capacity legislation was re-enforced during the committee hearing by several contributors, including representatives from the Law Society, Professor Gerard Quinn of NUIG, Amnesty International, to which I have referred already, the Alzheimer Society of Ireland and the Mental Health Commission.

Given the focus of part of my remarks this morning it is appropriate to refer to some failures. My remarks are for the attention of the Minister. There has been a failure thus far to appoint the 414 mental health positions promised for this year. The Minister of State, Deputy Lynch, has acknowledged this failure and has promised that they will be recruited by the end of the year. The money for this was allocated in December but it is now June. Why have none of these positions been filled? Is there a question mark over the efficiency of the recruitment process? Are the recruits available in Ireland?

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